Terrance James, PhD
My first experience with PWS came as a special education teacher when I worked with a young teen with PWS. She was the first student with PWS in our school and community. The management of her educational program involved home, school and community cooperation. The challenges of working with someone with Prader-Willi syndrome was a time of learning for me and my colleagues.
When I returned to university in 1984 to pursue graduate training I chose to work with PWS for a term in a course that I was taking on assessment. I was able to work with another teen with PWS of the same age as the one I had worked with back home. While both young ladies shared similar physical characteristics, they came from contrasting home environments and displayed different behavioural characteristics. Thereafter, I worked for a year with another young lady, providing behavioural support and counselling. When it came time to determine my dissertation topic, I found support for an exploratory study of PWS in western Canada. Fieldwork for Social and Psychological Aspects of Prader-Willi Syndrome (1987) covered the four western provinces and involved 51 families located through parent organizations and children’s hospitals. I graduated from the Rehabilitation Studies Program in the Faculty of Education at the University of Calgary.
After graduation, I returned to public school education and my role in the administration of student services. Over the next 23 years I also maintained an identity as a private practice rehabilitation consultant working with PWS. I was listed as a resource person through BC Children’s Hospital. For most families I was a last resort; they had exhausted the usual resources and were desperately looking for solutions to their problems.
In 1989 I co-authored Prader-Willi Syndrome: Residential Options in Western Canada, with Geoff Willott (PWSA Alberta); in 1992 I co-authored Prader-Willi Syndrome: Home, School and Community with Roy Brown (Chapman & Hall). Over the years I have had the privilege of speaking at local, provincial, national and international conferences. I have particularly enjoyed staying, or visiting, in the homes of families with a PWS member, and observing in group homes, day programs, schools and recreational programs.
After retirement in 2003, I wanted to re-visit the families that I had met in the 1985-86 period when I was doing my doctoral research. I simply wanted to know what life had been like for them. Out of this desire, a research project looking at quality of life evolved … and out of the project two books and this website.